Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for August 2022

Very HAPPY 😊

Started with ET Jak2 now have PV. I started Pegasys November last year on 45mcg weekly with venesections various times, now running at every 6 weeks ....

Started with ET Jak2 now have PV. I started Pegasys November last year on 45mcg...

Vtr1000

•2 years ago

13 Replies

ET and PV Treatments Are Moving Toward Disease Modification

« An improved understanding of these myeloproliferative neoplasms, including the identification of driver mutations in JAK2, CALR, and MPL, has opened the...

« An improved understanding of these myeloproliferative neoplasms, including th...

Manouche

•2 years ago

6 Replies

Better late than never

Afternoon my MPN friends. Not been on here for a while, but had to let you know got through the post this morning from the NHS seven covid tests and a letter...

Afternoon my MPN friends. Not been on here for a while, but had to let you know...

Superwoman

•2 years ago

15 Replies

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Travel Insurance

Travel Insurance recommendations for MPN patients please. Preferably to do online for quotes rather than having to wait ages on a phone. Have done Staysure...

Travel Insurance recommendations for MPN patients please. Preferably to do onl...

SDJD

•2 years ago

1 Reply

Fundraising News –September Blood Cancer Awareness Month fundraising ideas

September Blood Cancer Awareness Month is a well-known annual global campaign focussing on raising awareness for blood cancers, with charities and patient...

September Blood Cancer Awareness Month is a well-known annual global campaign fo...

Mazcd

Partner•2 years ago

2 Replies

Starting (again)on 23rd August

Helllo MPN friends, I thought I would just give you an update after my SCT was postponed in June. My new admission date is 23rd August and of course I...

Helllo MPN friends, I thought I would just give you an update after my SCT w...

Otterfield

•2 years ago

28 Replies

itching with ET and frofenadine?

hi all, so I have just got back from my first hospital appointment and the Doc has told me to try the above for my uncontrollable itching!! He says give it a...

hi all, so I have just got back from my first hospital appointment and the Doc h...

Grendall

•2 years ago

3 Replies

PV and elevated body temperature of 37.5

My dear MPN friends, Every day in the evening, I have a slightly elevated body temperature of 37.5 (I have a normal temperature during the day). It is now...

My dear MPN friends, Every day in the evening, I have a slightly elevated bod...

cvita71

•2 years ago

7 Replies

Worried about increased dosage of hydroxycarbemide

Hi everyone Four months ago I was diagnosed with ET JAK2 positive with platelets 689. I started on one tablet daily but after six weeks my platelets were 537...

Hi everyone Four months ago I was diagnosed with ET JAK2 positive with platele...

Na56

•2 years ago

55 Replies

fatigue

Hello everyone I’m ET JAK2 positive and suffer from very bad bouts of fatigue. I understand from information on the internet this a symptom of both my...

Hello everyone I’m ET JAK2 positive and suffer from very bad bouts of fatigue. ...

YBSx

•2 years ago

31 Replies

new breakthrough from San Antonio, Texas for patient MF

https://www.sanantoniomag.com/breakthrough-research-at-ut-health-san-antonio/?fbclid=IwAR22BPS1-x3yy--HwrqQnpFLjYjHbMJwSigEWPjmlMZrMnJBbf4W7lC28F8

https://www.sanantoniomag.com/breakthrough-research-at-ut-health-san-antonio/?fb...

william-Indo

•2 years ago

7 Replies

Post Shingles Pain

I had mild shingles (not bad blisters) as I'd had the injection but much pain in my teeth. But following the acyclovir course and things subsided the pain in...

I had mild shingles (not bad blisters) as I'd had the injection but much pain in...

omits

•2 years ago

8 Replies

NHS Services and Hydroxycarbamide

Have been using hydroxycarbamide for twenty years, diagnosed living in London and received NHS exemption for perception's, dental and eye care. Moved to...

Have been using hydroxycarbamide for twenty years, diagnosed living in London an...

Scotishtaffy

•2 years ago

5 Replies

ET and Hormone Replacement Therapy

I am 57 years old with CALR Essential Thrombocythemia, taking aspirin only. I am suffering from a lot of night sweats and hot flashes. My doctor said I should...

I am 57 years old with CALR Essential Thrombocythemia, taking aspirin only. I am...

kacollin

•2 years ago

12 Replies

All clear

well I have had my telephone consultation with the haematologist just. my epo 7.3 and two under 450 bloods tests later he's discharged me. 395 I had my...

well I have had my telephone consultation with the haematologist just. my epo...

Notdiagnosed

•2 years ago

18 Replies

horse fly bites and sepsis

A pertinent warning to anyone who has a horse fly bite. Please be wary of infection that can turn quickly into sepsis. Two days ago a friend of ours ( aged...

A pertinent warning to anyone who has a horse fly bite. Please be wary of infect...

Loubprv

Volunteer•2 years ago

17 Replies

test results

So I never posted test results but I’ve been feeling so poorly lately, I decided to reach out to my mpn friends for your sage advice. I’ve been taking blood...

So I never posted test results but I’ve been feeling so poorly lately, I decided...

Cja1956

•2 years ago

25 Replies

Jak2 targeting for therapies

We've had posts on promising immune therapies for CALR. These take advantage of the fact that CALR is findable in the body. A related item is the resistance...

We've had posts on promising immune therapies for CALR. These take advantage of ...

EPguy

•2 years ago

3 Replies

Dry skin

I have been noticing patches of dry skin. I have been on hydroxyurea for about a month. I am using lotion but I’m wondering if there’s some kind of...

I have been noticing patches of dry skin. I have been on hydroxyurea for about ...

Winchie

•2 years ago

26 Replies

Care Advice

Hi I am in the UK and was diagnosed with PV March this year. I have been having consultations venesections and taking aspirin through NHS care since then....

Hi I am in the UK and was diagnosed with PV March this year. I have been having...

Hocus58

•2 years ago

7 Replies

Save the Dates for 3 MPN Voice in-person patients’ forums

We are very pleased to announce that we will be holding 3 in-person patients’ forums in the coming months, full details will be announced shortly, but in the...

We are very pleased to announce that we will be holding 3 in-person patients’ fo...

Mazcd

Partner•2 years ago

Be the first to reply

MPN Voice ‘virtual’ forum, Wed 7th September 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

This MPN Voice ‘virtual’ forum will feature talks from: Dr Anna Godfrey, Dr Joanne Ewing, Professor Mary Frances McMullin and Professor Claire Harrison....

This MPN Voice ‘virtual’ forum will feature talks from: Dr Anna Godfrey, Dr Joa...

Mazcd

Partner•2 years ago

Be the first to reply

what next after ruxolitinib for MF?

Ive been on ruxolitinib for about a year for MF. It has gradually been increased to 2x10 mg a day but my platelets have fallen to c76 so my consultant...

Ive been on ruxolitinib for about a year for MF. It has gradually been increa...

Scaredy_cat

•2 years ago

4 Replies

Bruising at the slightest touch

Hi, has anyone else had or suffer with bruising at the slightest touch of the forearm? They are deep purple bruises when it happens and sometimes it’s so sligh...

Hi, has anyone else had or suffer with bruising at the slightest touch of the fo...

Katnap123

•2 years ago

17 Replies

Is 69.7 % my allele burden?

Testing in January of 2022 just prior to the first Besremi injection. Is Mutation Frequency the same as Allele Burden? Please see attached lab results...

Testing in January of 2022 just prior to the first Besremi injection. Is Muta...

Pat032018

•2 years ago

7 Replies

hot flushes

I have essential thrombocythemia jak2 for last 2 weeks I’ve been feeling very tired and also having a lot of hot flushes anyone else have this

I have essential thrombocythemia jak2 for last 2 weeks I’ve been feeling very ti...

Chel1

•2 years ago

27 Replies

polycythemia Vera (PV) mechanism

A short clip outlining the mechanism of disease for PV. https://www.medillsb.com/illustration_image_details.aspx?AID=11311&IID=363885

A short clip outlining the mechanism of disease for PV. https://www.medillsb.co...

Manouche

•2 years ago

5 Replies

just a little question

hi lovely people just a small question am be to this site and it’s been very helpful, I got diognsed in may with ET and Jak2 , went the hospital last wk to see...

hi lovely people just a small question am be to this site and it’s been very hel...

Staroftheday

•2 years ago

3 Replies

combo Jakafi and Pegasys

i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135mcg weekly for PV and it success to reduce my PLT from 1.2mi to 300k; HCT from...

i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135...

william-Indo

•2 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Very HAPPY 😊

ET and PV Treatments Are Moving Toward Disease Modification

Better late than never

Travel Insurance

Fundraising News –September Blood Cancer Awareness Month fundraising ideas

Starting (again)on 23rd August

itching with ET and frofenadine?

PV and elevated body temperature of 37.5

Worried about increased dosage of hydroxycarbemide

fatigue

new breakthrough from San Antonio, Texas for patient MF

Post Shingles Pain

NHS Services and Hydroxycarbamide

ET and Hormone Replacement Therapy

All clear

horse fly bites and sepsis

test results

Jak2 targeting for therapies

Dry skin

Care Advice

Save the Dates for 3 MPN Voice in-person patients’ forums

MPN Voice ‘virtual’ forum, Wed 7th September 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

what next after ruxolitinib for MF?

Bruising at the slightest touch

Is 69.7 % my allele burden?

hot flushes

polycythemia Vera (PV) mechanism

just a little question

combo Jakafi and Pegasys

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Very HAPPY 😊

ET and PV Treatments Are Moving Toward Disease Modification

Better late than never

Travel Insurance

Fundraising News –September Blood Cancer Awareness Month fundraising ideas

﻿Starting (again)on 23rd August

itching with ET and frofenadine?

PV and elevated body temperature of 37.5

Worried about increased dosage of hydroxycarbemide

fatigue

﻿new breakthrough from San Antonio, Texas for patient MF

Post Shingles Pain

NHS Services and Hydroxycarbamide

ET and Hormone Replacement Therapy

﻿All clear

horse fly bites and sepsis

test results

Jak2 targeting for therapies

Dry skin

Care Advice

Save the Dates for 3 MPN Voice in-person patients’ forums

MPN Voice ‘virtual’ forum, Wed 7th September 2022, 4.30 – 6.15 pm (16:30 – 18:15) BST

﻿what next after ruxolitinib for MF?

Bruising at the slightest touch

Is 69.7 % my allele burden?

hot flushes

polycythemia Vera (PV) mechanism

just a little question

﻿combo Jakafi and Pegasys

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Starting (again)on 23rd August

new breakthrough from San Antonio, Texas for patient MF

All clear

what next after ruxolitinib for MF?

combo Jakafi and Pegasys